Virus concerns stall Baby Ruby's spring blossoming in Wading River
Ashley, Ruby and Brian Cotter, in a selfie taken at their Wading River home, where the family is isolated indefinitely to prevent Ruby, a heart transplant patient with a lifelong suppressed immune system, from getting coronavirus. Credit: Cotter family
Baby Ruby Cotter of Wading River has been isolated most of the nine months she’s been alive.
But, her parents hoped, she could begin to blossom this spring: seeing visitors to the house, spending time with grandparents, dining out at a restaurant, picking peaches and strawberries.
Then the coronavirus outbreak hit.
Now, the three must remain isolated indefinitely to protect Ruby's weakened immune system, compromised by medicine designed to prevent her body from rejecting the donated heart she received in transplant surgery in December. Her parents, Ashley, 29, and Brian, 35, must stay away from the outside world, too, lest they contract, and pass along, the virus to Ruby.
“We can’t risk Ruby getting sick. Unfortunately, that means even more isolation,” Brian Cotter said, adding: “The rest of the country is starting to live the way we have been.”
Ruby has a rare, potentially deadly disorder, affecting at least 1 in 100,000 children, called dilated cardiomyopathy, which restricts how blood is pumped to the body and vital organs. She was born in June and hospitalized in September at NewYork-Presbyterian in Manhattan, where she had two heart surgeries. In January, Ruby, came home to Wading River.
Data on coronavirus and its effect on transplant patients is incomplete. But based on related viruses like influenza and SARS, “if infection occurs, progression to pneumonia may be more common in the immunocompromised population, including transplant recipients,” according to the American Society of Transplantation.
As hospitals worldwide have imposed limits on in-person care in order to curb the coronavirus' spread and to make room for an expected swell of virus patients, less urgent medical needs are being put off.
In Ruby's case, that means her physical, occupational, speech and swallow therapy have been canceled, Brian Cotter said.
“She just doesn’t have the strength that a normal 9-month-old baby should have. Especially in her core, arms and shoulders,” he said, adding: “She is physically behind from being on her back in the hospital for four months.”
She has trouble eating, swallowing and using her vocal chords, he said. The couple are helping as best they can from home with her exercises directed by the therapists.
Since Ruby got home Jan. 7, in the throes of flu season, the three remained isolated. The couple had hoped the restrictions — rejection of a heart is highest in the first six months after a transplant, so there are usually higher doses of the immunosuppressant, according to the Cleveland Clinic — could ease up once flu season ends this spring, and the couple could return to work. The Cotters haven't been able to work since September while tending to their daughter.
A GoFundMe set up in September has raised $113,135. But the money isn't endless, and the couple wants to go back to their jobs: Brian Cotter is a military contractor and aviator. Ashley Cotter works in the pharmaceuticals industry.
“At some point we need to start making money again,” Brian Cotter said. “We can’t stay home with her forever. It wouldn’t be healthy for any of us.”
While in isolation, the couple paints and plays music and stages photo shoots and tends to their two dogs "to keep our minds sharp," Brian Cotter said.
In a recent family portrait taken with a tripod and timer, Ruby variously smiled and pouted.
“Ruby is great. Very happy,” he said. “She really doesn’t know the difference. It’s my wife and I that are going a little stir crazy.”
Matthew Chayes, a Newsday reporter since 2007, covers New York City.
